For information about Crohn's disease and/or ulcerative colitis, contact the Crohn's and Colitis Foundation of America (CCFA) at ccfa.org or 212-685-3440. The Rocky Mountain Chapter in Denver can be reached at 866-768-2232 or 303-568-0424.

Inflammatory bowel disease.

It's an uncomfortable subject, but one Lois Fink wants to talk about. IBD is the umbrella term that describes Crohn's disease, ulcerative colitis and issues involving ostomy surgery.

"Due to the nature of symptoms -- pain, diarrhea -- we're not comfortable talking about our gut," Fink says. "We use terminology such as 'going with your gut' and 'gut feeling,' but we don't want to hear about the actual function. There's silence, shame and embarrassment regarding symptoms of this disease we're not encouraged to talk about."

To bring such conversation into the open, Fink and her friend Barb Wodzin have created a ribbon designed to bring the issue "out of the bathroom and into the living room."

Lois Fink poses for a photo Wednesday holding ribbons she designed to raise awareness and support for people who have Inflammatory Bowel Disease.
(
Jenny Sparks
)

The shiny, brown ribbon features a red jewel in its center. Fink calls it "a ribbon on a mission, a gutsy ribbon that bears the tag line 'It's more than a ribbon; it's a movement.'"

She's more than comfortable with the play on words. "We've started a movement -- that's exactly what we call it."

After 34 years, Fink recently returned to Fort Collins. While living in Seattle, she met Wodzin, a volunteer with the Northwest Crohn's and Colitis Foundation of America (CCAF), and the two came up with the idea of the ribbon.

"Living with a chronic disease is lonely, especially if it's one nobody wants to talk about," Fink says. "We're two women who understand how empowering it is to be open about it. We all have to go to the bathroom, but we get real squeamish when we talk about not being able to control it."

Fink is one of the estimated 1.4 million Americans living with IBD. As a child, her symptoms were labeled as growing pains, nervousness and even appendicitis. By the time she was 17 and rushed to the hospital, she'd lost weight and her growth was stunted.

"I weighed 62 pounds and looked 10 years old," she recalls. "I had all the classic symptoms -- diarrhea, fever, leg cramps -- but my mother was told by the physician that I was making it all up.

"In surgery, the doctor realized I didn't have appendicitis," she says. "They opened me up and closed me right back up."

What followed was a series of surgeries and treatments that simply delayed the inevitable decision to have an ostomy, in which an opening is created surgically for the discharge of body wastes. The resulting stoma is the actual end of the ureter or small or large bowel that protrudes through the abdominal wall.

"I was basically living in the bathroom," Fink says. "I had stopped all activities; my spontaneity disappeared. It was a nightmare."

She was 36 when she had the ostomy. "I'd been in denial for so long and finally admitted that was no way to live," she says.

Her surgeon put her in touch with a woman who had an ostomy. Receiving the firsthand knowledge was inspirational. The women asked Fink to list all of the things about Crohn's disease that made her angry.

"I came up with 15. The last on the list was that I was tired of being an observer of life instead of living it," Fink says. "I saw how narrow my life was -- it mirrored my intestinal tract. It's a very scary surgery, but it gave me back my life. Three days after surgery, my body could already feel the difference."

Her mission now is to de-mystify IBD and ostomies. "It's simply a different way to go to the bathroom," she says.

It's also not your grandmother's surgery, but more streamlined, she says: "We don't wear a 'bag.' Instead, it's an ostomy pouching system. I can wear stylish clothes, and unless I told you, you would never know."

Fink believes in talking straight about the subject. "Unfortunately, it's still the butt of jokes or something to be whispered about," she says. "We're trying to change that. This is not a horrible surgery; it's a life-saving surgery. What is horrible is to die from complications of the disease -- that's the real tragedy."

Fink is eager to speak about the subject whenever and wherever she can. She's making sure information about the ribbon campaign is available in hospitals and doctors' offices along the Front Range. To date, ribbons have been sent to 34 U.S. states as well as Canada, Australia, the United Kingdom and Malta.

"I'll go anywhere, anytime, to talk about this topic," she says. "I'm not sitting on the sidelines of life anymore"

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